I wrote about my mother having the start of pneumonia. She was treated for 10 days with Levaquin and continually went down hill. Her pneumonia seems to be better, but she eats almost nothing, and she is having trouble walking. It takes two people to get her to the bedside commode. She won't even open her eyes until half way through the day. Her primary doctor has mentioned a feeding tube, her neurologist says that she might not come back if we put her under and we would have to find a surgeon that would do it without general anethesia. Her advanced directive says no feeding tube, but only if she can't recognize family and friends, but she can still recognize me and the grandkids. I don't know what to do. Her blood pressure went from 76/42 to 130/60. I was surprised that someone could live at 76/42. When she falls off of her medicine, she is having massive panic attacks and then passing out. They are really scary for her and me. She has a potassium IV in her arm. She is for the most part incoherent. She thinks she is making sense. She is supposed to go to a nursing home for rehab on Monday. I don't know what to expect now, and I don't know if I should get the "peg" or not. She was doing o.k. two weeks ago; we would go to the movies and out to eat quite often. She was often confused, but was mobile and enjoyed getting out. Now I don't know what to do or what to expect.

Fri Mar 16, 2012 10:16 pm

Gerry

Joined: Sun Oct 21, 2007 4:18 pmPosts: 835Location: Acton, MA

Re: Still in Hospital - talking about a feeding tube???

Marie, LEVAQUIN got my attention. Frank went to a NH for rehab when they said he had the start pneumonia. They started him on Levaquin and he went downhill daily. Every time they came to get him he was not coherent and when they got him up it took two people. They didn't want me to take him home but he wasn't getting the rehab that he was there for so I did take him home. Another person in the Nursing Home was on the same med and had the same reaction as Frank so we thought MAYBE, it was Levaquin. I had to have a neighbor help me get Frank out of the car and into the house, as the hours went by he did improve, within two days he was back to "his" normal. Just wanted to pass on our experience with that med.Good Luck,Gerry

Most researchers who have looked into the topic do not recommend feeding tubes for someone with dementia.

Could her eating "almost nothing" be related to her recovering from pneumonia? Was she eating "almost nothing" prior to the pneumonia? Could her body be shutting down?

You said: "Her advanced directive says no feeding tube, but only if she can't recognize family and friends, but she can still recognize me and the grandkids."

What exactly does her advance directive say? "I would like a feeding tube except in the case that I cannot recognize family and friends"?? What conversations have you had with her about this topic?? Do you think she would view eating "almost nothing" as a good reason for a feeding tube??

In her current incoherent state, can she recognize you and her grandchildren? Or are you thinking back to a time pre-pneumonia? I would not expect that the confusion would end until she's been out of the hospital for some time and into an environment where she feels safe and comfortable. So, to that extent, you might want until some weeks from now before deciding about the feeding tube. That would give you time to consult with friends of hers about what she may've said to them about end-of-life treatment.

I'm not sure what you mean by "falls off of her medicine." Do you mean off-times with levodopa? Can the neurologist try to figure out how to reduce these off-times? Does she need the levodopa at this point? Can she be titrated off of it?

Robin

Sat Mar 17, 2012 4:51 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Still in Hospital - talking about a feeding tube???

Is the feeding tube expected to be temporary, while she regains some strength, or would this be a permanent measure?

A feeding tube was once recommended for Coy. He turned it down, and I confirmed that that was consistent with his pre-dementia attitudes. I learned later that dementia patients with feeding tubes often wind up on restraints, either physical or drugs, to prevent them from trying to remove the tube. I am really very disturbed that this is not explained at the time the feeding tube is recommended, so people can make a more informed decision.

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

An additional concern raised previously by Leone and Jeanne is captured in this article about a study that showed that feeding tube placements were more frequently suggested by for-profit hospitals than not-for-profit ones:

You might do a search of past posts containing the words "feeding tube dementia." There are a couple of good posts there with worthwhile reading.

For example, this post -- viewtopic.php?f=4&t=2747 -- provides a good short article on the decision surrounding whether a loved one should get a feeding tube, when the decision is left up to a family member (with power of attorney). The article discusses the case when a feeding tube may be temporary (such as Gabrielle Giffords) and the other end of the spectrum when a feeding tube near the end of one's life has benefits that are "hard to discern." The gray area, of course, is in between.

Marie,I see in your post today* that you've decided against a feeding tube based upon your mother's advance directive and her current health status. Can you say more about how the advance directive helped you in coming to this decision?Robin

I thought I had made my decision, but I am still up in the air. I have a consult for a tube. I was talking about it with the physical therapist when she had a lucid moment and asked what a tube is. He explained it to her. She said, "I don't accept that" and then she went back to sleep.

Her advanced directive states that she wishes to refuse an artificial feeding if she is unable to recognize and or communicate with family as a result of illness or condition causing a progressive functional deterioration. Her statement today leaves me in a quandry. She was able to state that she doesn't accept that (the tube), but she stated that she didn't want the tube. So there was communication, but the communication stated not to do the surgery. Was she coherent? I don't know.

The doctor that saw her today in the rehab facility says that she still has pneumonia and that she will possibly have to return to the hospital for nutrition until the tube is put in. They are going to do what they can to help her in the rehab facility. They are much more attentive than the hospital. They have gone back to feeding her solid food. She won't touch the pureed stuff. She took six bites of her spaghetti today with no aspiration. She is on a sugar/saline drip and oxygen. She will be on new antibiotics this afternoon. She is very weak, and sleeping most of the time. I don't know if she would make it through the trauma of getting a tube much less keeping it in. She has pulled her IV's out twice.

Wed Mar 21, 2012 5:02 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Still in Hospital - talking about a feeding tube???

Just my humble opinion but I would let her eat real food as long as she is able, avoid thin liquids and make sure she is sitting upright. There is no pleasure derived from a feeding tube. My husband had one for several months about 25 years ago due to a temporary neurological issue that made him unable to swallow. He also had a tracheostomy, also temporary. He tolerated the trach OK but really hated not being able to eat. It's one of the few pleasures left to those who are incapacitated and an important part of our daily lives.

Just a note: Doctors and facilities will almost always choose medical interventions. It's what they're about. You don't have to follow their advice. Your mother and you know best what to do.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Wed Mar 21, 2012 5:22 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Re: Still in Hospital - talking about a feeding tube???

If your mom has told you recently, as well as in her AD, "no feeding tube" I guess I am wondering why you are questioning whether or not to do this medical intervention against her wishes. Would you be doing it to help her or to help you? How would surgery improve her quality of life? Hugs, Lynn

_________________Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Wed Mar 21, 2012 5:47 pm

labeckett

Joined: Thu Apr 21, 2011 9:07 pmPosts: 248

Re: Still in Hospital - talking about a feeding tube???

Hi Marie,

You are facing tough decisions! But it sounds as if your mother has given at least some clues to help. She knew that the time would come when she would not want to have a feeding tube, and she was pretty sure that she wouldn't want it after she lost the ability to communicate. It sure sounds like she has given you reasons to think she does not in fact want it now. And other procedures (maybe not even as difficult) have been stressful for her. Set against that, as Lynn says, what might the benefits be? And do you think they would outweigh the discomfort and stress? That's where the difficulty comes in, making the decision hard.

My mother quit eating for a while in her recent pneumonia. Except for one small container of ice cream... Did not last as long, and no one suggested a feeding tube. But (from this distance anyway) I don't think a feeding tube would have been the right choice for her. I figure, though, as long as she still eats ice cream, she is ok, and if she refuses ice cream, then she really, truly, does not want to eat any more.

Marie,It's a gift that your mother was lucid enough today to ask what a feeding tube was, and then said she didn't accept it! And that someone else was there to hear it was remarkable; you will have some objective support.Robin

Wed Mar 21, 2012 6:40 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Still in Hospital - talking about a feeding tube???

Quote:

and if she refuses ice cream, then she really, truly, does not want to eat any more

I'll second that criterion!

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Wed Mar 21, 2012 6:46 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Still in Hospital - talking about a feeding tube???

I agree with Robin. What a remarkable gift that moment of lucidity was. You want to know what Mother would want, and she was able to tell you. Awesome!

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

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